Five Years

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I’ve said it here before. I love when I struggle to write a piece, and in doing so, I learn something about myself. I’ve been writing and re-writing this post for days. Last week was my five year “cancerversary,” and I felt like I should write some sort of celebratory post for the occasion. While it’s not true for most breast cancer patients whose breast cancer can still come back ten, fifteen, even twenty years later, once a triple negative patient gets to five years past diagnosis with no mets, the risk for recurrence is negligible. (The “silver lining” of a super aggressive tumor is that it can’t lie in wait too long. If it’s coming back, it’s usually fast and hard.) Translation: I probably won’t die from breast cancer. Seems celebration-worthy, no? And yet, there is no celebration in my heart. A fellow triple negative friend brought me a lovely orchid and a card last week.  “…it means so much, yet nothing at the same time.”  She got it completely.

After writing several different versions of the post and hating every single one, and I think I finally figured out why I can’t celebrate. It’s survivor’s guilt. Why am I the one who gets to live while others die? I never obsessed over dying, I really never gave it much thought. I think making it this far, I’m coming to terms with the fact that I probably won’t die from breast cancer. Still sounds like something to celebrate, not to “come to terms with.” But my heart has broken over and over again watching friends die of the disease we share. It’s so hard be happy for myself as I grieve for my friends, knowing that 113 women and men will die of metastatic breast cancer in this country every single day.

So, there’s no big five year party for me. I’m healthy and things look good. But maybe let’s not make a big deal out of it. It’s hard to celebrate, knowing how many won’t get that chance.

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In Good Company | #AlwaysForward

When I headed to google yesterday afternoon and started typing, I was a little surprised at how quickly google figured out what I wanted to know.

startupYep, of course google knew, and it turns out that’s because lots of other people turn to google in desperation after hearing the same words I’d just heard from the CEO of Cure Forward. I was curious how many startups fail, and from just a glance at the first page of results, the number looks to be between 80-95%.

So, we’re in good company. The bummer thing is, I thought Cure Forward really was a good company before it was forced to make the hard decision to cease operations. I knew startups are a risky business, and since I remember thinking that I really hoped this one would be successful, I suppose I knew that this was a possibility. I really do believe, with time, it could have been profitable, but sadly not in time to meet goals. There is such a gap between patients desperate for trials, doctors who are desperate to help their patients, and trial sponsors who are desperate for participants. The need is there, and I thought Cure Forward could stand in the gap to effectively meet the needs of all the stakeholders.

Now, of course, I’m disappointed that my last paycheck will be coming in a few days, though I know there are those who had more substantial roles with the company who are left searching for a job because they need one. And it is devastating for all of us with an emotional investment in our desire to see this model work. But really, my heart is shattered for all the patients who were in the process of looking for a trial and found hope in the clinical trial navigators of Cure Forward, patients who are now left on their own with a heartfelt “I’m sorry.”

What makes this so hard is that I really believe this crew could have been a powerhouse in getting patients to the right trials. I know that the people at the top have really good hearts– Martin, Alicia, and Frank really wanted to help patients. Sure, they each had jobs to do as they built the company, but their intent was to improve outcomes for cancer patients, and they weren’t willing to compromise that for a single cent. What makes them so unique to me, though, was how they were willing to really engage and empower patients. Our little crew of Precision Medicine Advocates was not only compensated (many assume an advocate is willing to do tons of work for no money because of their emotional attachment, and frankly, take advantage of the situation) but we were actually encouraged to represent the company. Our content was prominently featured on the website, our opinions sought, and our contributions made up the bulk of the company’s social media presence. I went to policy and scientific meetings and even set up a meeting with my local cancer center as a Cure Forward Advocate. I genuinely believed Cure Forward would make a difference for patients, and I felt like my contributions would be able to help make that happen. Of all the projects where I’ve been involved, the PMA Team at Cure Forward is among the few where I felt not only welcome, but sought after. I felt like I brought value to the team. Being part of the PMA team has allowed me to meet a few new advocates and get to know others better. We are not only resources for each other, but we are friends. We are committed to continue to write and tweet and engage, and to figure out creative ways to fund our little band of advocates. I’m sad that Cure Forward will be shutting its doors and closing down the site. Sure, even really successful people fail a lot of times before they succeed, so we’re in good company. It’s just that I already was in a good company, and I’m sad to see it end.

Perhaps it will just have to be the beginning of something else. #AlwaysForward

 

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Hair Update | Four Years and Counting

Four years ago, Sally and I set out for a fun photo shoot day to document my barely-there hair. It was soft and blond, and while it definitely still looked like a decision that was made for me, I actually really liked it super short. So it seemed that four years later was a good time to check in. At one point, I figured out that it would take 4.9 years for my hair to completely grow back to its pre-chemo length, and it turns out that math was pretty good. So for a little walk down memory lane:

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Three years of hair growth, starting in May 2013, finishing in April 2016

There were definitely struggles, especially when I was a week or two away from a haircut. But really, I liked a lot of the styles as it grew. I put this collage together for a new friend who is starting to grow out her hair after chemo and had asked about products. I realized that since we’ve only known each other around 6 months, she never saw my short hair. And as I put it together, it struck me how much I really loved the 6-9 months stage (pictures 3 and 4).

So I’ve been thinking about that hair for a while now. I even had a dream that I showed up and demanded that Dragan cut it all off! And while I fantasize about that a lot lately, I can’t seem to take the plunge. It’s taken so long to get to this point!

Curled in November 2016, straight today

Curled in November 2016, straight today

I was having a hard time figuring out exactly why I can’t cut it. I really did love the way it looked short, and I loved the powerful feeling short hair gave me. But it took so long (four years!) to get to this point, and there were lots of maintenance haircuts and more than a few rough patches. And while it was quicker to get out the door, no ponytail could change my look or save a bad hair day.

But I realized something funny last week. I was in Illinois, seeing friends and family I hadn’t seen in years. In situations like that, people want to ask if you’re still healthy, but they have a hard time knowing how to do it. I choose to just make it easy and at the first suggestion,  I will say something about feeling great and having good reports at my latest checkup. Now, to emphasize how long it’s been, I have caught myself mentioning that my hair is long again and I’m feeling great. And so this weekend I realized it. My long hair is a milestone. The further the end of each strand of hair is from my scalp, the further I am from cancer. Now when I tell people that I had cancer, they can quickly know that it was a while ago, because otherwise, I wouldn’t have such long hair, right?

My hair desperately needs to be cut. As a matter of fact, I think my last haircut was just before that curly shot in November. The ends are starting to split and it’s just getting that unhealthy look to it. I had been putting it off, and about the same time I realized why I’m holding onto the long, high maintenance hair (which I do love, too, by the way), I realized why I haven’t scheduled that appointment. I can’t decide whether to ask for a trim or to go back in time three and half years.

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Toxicity Troubles | The Aftermath of Cancer Treatment

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I had the pleasure of presenting to the Georgetown Breast Cancer Program on behalf of the Georgetown Breast Cancer Advocates a couple of weeks ago at their annual retreat. In my brief talk, I hoped to encourage them to engage patient advocates as part of their research team. I was sure to point out that as advocates, we try to represent more positions than just our own.

Anytime I have a forum to speak “on behalf of the patient voice,” I try to be sure to incorporate more voices than just mine. I don’t like the idea of a few elite patients doing all the talking when researchers, clinicians, and pharma decide to engage patients. And so, when I’m planning a talk, I try to ask for input.

Next week I will be part of a session at the Society of Toxicology shedding some light on the many toxicities that patients face as they undergo cancer treatment, and those that continue for years, or follow them for their entire life. But I need some help! Do you have any burning questions or things that you think need to be considered more than they are? What would you like researchers to address going forward? Please feel free to comment here, on Facebook, or email me– I really do want to be sure I address YOUR concerns!

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Updates | Exploring Clinical Trials and Interesting Analogies

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So I know I’ve been pretty quiet here lately. Between my two jobs, a few new volunteer positions (cancer, church, and mom related), and normal shuttling of children to all the places, I’ve been pretty slammed. But I have been writing a few things lately, anytime you’re interested, you can find my latest post on my contributor page on Cure Forward. So far, five of my pieces have been published, and they focus on the ideas of precision medicine and clinical trials.  If you’re interested in a cheat sheet– here they are:

Check them out, and as always, I’d love to hear what you think!

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Time Flies

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This morning Facebook told me that I had memories for the day, and I love looking back at old pictures of my sweet kiddos, so of course I clicked over to reminisce. Among all the fun fall pictures I’ve posted on this day through the years, I was surprised to see a photo of the Washington Monument captioned with “This morning’s run.” I very rarely run downtown, so it took me a minute to remember why I’d done a special run that day. I screwed up my brow and looked at the date. And then it hit me. I’d forgotten a very important day, one that I never thought I’d forget.

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My cancerversary. Four years ago, on October 5, my surgeon told me that I had breast cancer.That was definitely one of those days whose date really sticks with you. And yet, only four years later, I might have forgotten it completely without Facebook.

So this left me with some weird feelings. I mean, I hadn’t forgotten my best friend’s birthday. But I was disappointed in myself that I let such monumental day pass so unceremoniously. It’s not really a day to celebrate, it’s more like my own personal Memorial Day– a day to remember. In the past I’ve always gone for a good run or spent the day with friends. I was disappointed in myself, but then I decided I should congratulate myself– I may not be at the point where I can’t remember the date, but I should count it as progress that the date wasn’t looming over my head like a dark cloud.

I sometimes worry that I’ll never have a “cancer-free day” where I don’t think about cancer at all– it’s my job to think about cancer. But maybe when I’m really busy and have a lot of life going on around me, or maybe when enough time has passed, maybe it will be possible for me to have a day when I don’t think about my cancer at all.

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The Thing with Clinical Trials

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Yes, that’s me working on my computer in a quiet corner while my kids are at the pool. Talk about multitasking.

Having the kids home from school over the summer while I simultaneously started two new jobs made things a little hectic. Couple that with family travel and dealing with the loss of a friend to breast cancer and writing my first eulogy, I was pretty much in survival mode. Things got done, but mostly only the urgent things got done, and then only just before they absolutely had to. So this week I’ve been trying to catch up on things that got put on the back burner, and I’ve been trying to think about some things in a bigger context.

So for a day or so this week, I started wondering about the wisdom of accepting two jobs at the same time. I’ve wanted the position with the MBCproject at the Broad for over a year, it definitely falls into the dream job category, and I accepted the position at Cure Forward before I knew that the MBCproject was going to work out. It wasn’t something that I’d been looking for, but I loved the idea of a company valuing the patient voice enough to build a team of advocates. That’s a big thing, and I wanted to be a part of it. Still, I don’t want to feel like I’m selling out, offering to speak for anyone who will hire me. I wanted to be sure that both projects were a good fit for me.

But then today I was answering some interview questions for an upcoming feature on the Cure Forward blog. Because they match patients with clinical trials, the interviewer wanted to know what I thought about trials. Well, friends, they are super important. That’s how the FDA knows if a drug is safe and effective to treat disease. The problem with clinical trials in cancer is that only about 5% of cancer patients participate in a clinical trial. Now, to be clear, not all patients need to be treated on a clinical trial. Sometimes there just aren’t trials for that cancer. But there are a lot of people who could be on a trial but just don’t know about them. That’s so sad. It keeps a potentially good drug from a patient, and lower recruitment means it will take longer to figure out if a drug is good. I think we all agree that getting a good drug to patients faster is the best outcome. There are also a lot of people who would like to be on a trial that would treat their tumor, but a long list of exclusionary criteria keeps them out. All those exclusionary criteria keep the trial neat and tidy– it’s easier to analyze results that aren’t muddied with heavily pretreated patients or patients who have other health issues, too. But not including patients in the trial who will be ultimately treated if the drug is approved seems like a misstep. This is obviously a big thing to fix, and I’m so heartened that every time I hear Rick Pazdur speak (he’s the acting director for the Oncology Center of Excellence at the FDA), he talks about finding ways to fix this problem. Still, there are so many patients who will never be on a trial, either because they don’t qualify or they live too far from a center, or they just can’t find the trial that’s right for them, and their experiences are important, too. Finding a way to capture and analyze the real world experience of all treated patients would be a game changer.

More data is what drives science forward. So today it occurred to me that all my interests really are aligned. Cure Forward is trying to break down that first data barrier by helping patients find clinical trials that will work for them, and they make it easy on the patient to participate. The MBCproject is trying to move science forward on the back end– capturing all the clinical and genomic data after the fact, including every single metastatic breast cancer patient, not just those 5% that could participate in a trial. They make it easy for the patient to participate, too. Both these groups are moving the science of cancer research forward in an important way, and they are including patients in the process. So I’m on board. If someone is working hard to move the science of cancer research forward and they want to include a patient voice in the process, I don’t see a downside. It’s going to take a lot of different people working in lots of different ways to make an impact, and I hope that lending my experiences might help patients participate in moving science forward for us all.

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Precision Medicine and Coinstar Machines

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First of all, thanks for all the love on my last post. Being part of the MBCproject team has been an awesome experience even in the first few months, and I promise I’ll update on some of the details soon! But I also wanted to share another cool project that I’ve been a part of over the summer.

I started working with Cure Forward, which is basically a matching service to help cancer patients find clinical trials based on the DNA profiles of their tumors. Though I hadn’t heard about the company before I was approached to be part of their Precision Medicine Advocates team, I knew the patient advocate who would be leading the team, so I looked into it a bit more. It was one of the private companies specifically listed in Vice President Biden’s Cancer Moonshot to help make finding a clinical trial easier, and I love the fact that they are willing to work with patient advocates to make sure that everything they do remains focused on delivering the best care to patients in the easiest way possible.

I’ve written a few things for them, and my first post went live last week. As I tried to explore what precision medicine means to me– and why it’s exciting but not the silver bullet for all of the cancers ever (right now, at least!)– I was left with the image of a Coinstar Machine in my head. That’s sort of how we do cancer care now– dump all the patients in a sorting machine and they end up in categories that determine their treatment. Head on over to my post at Cure Forward if you want to see why I think Precision Medicine is an improvement on good-old coin counting!

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When I Grow Up

When I was in the third grade, I had to write an autobiography, closing with what I wanted to be when I grew up. I’m not sure how I decided that I wanted to be a scientist, or if I ever wanted to be anything else before then, but it never occurred to me to rethink the decision once I put it in writing in the third grade. Before I reached my teenage years, I had decided that I wanted to go to college in Boston– preferably MIT, but Harvard would also work– and I would play my violin with the Boston Pops. (Don’t you love the big dreams and confidence of an 11 year old?!) By my sophomore or junior year of high school, I had my sights set on a biochemistry degree, and while I was still hoping to head to the east coast, I had (quite wisely) abandoned the idea of playing my violin professionally while I was also in college. Even though I didn’t make it out east for college, I did end up in DC for graduate school at Georgetown University, so I figured I’d pretty much gotten the dream. It wasn’t until about halfway through graduate school that I realized that I didn’t really know what I wanted to be when I grew up, I really needed to know more than “scientist.” I knew that I loved science and wanted to use that to make a difference in the lives of breast cancer patients, but I didn’t see myself making a career in academic science. I enjoyed thinking about how science could inform the way patients are treated, and I was convinced of the importance of ensuring that patients and the public really understand the interaction between science and medicine. Unsure of how to turn those things into a career, but quite sure of how much I wanted to stay at home with my tiny new baby, I decided to revisit the “What I Want to be When I Grow Up” saga in a few years, and left the lab with my PhD after Emma Clare was born.

As I sent baby #2 off to kindergarten, I apprehensively decided it was time to think about what I wanted to be when I grew up. Or maybe I should give myself a few months, and then it would be time. Instead, during those few months I was taking to get the kids settled in school– procrastinating, I know– I was diagnosed with breast cancer. After chemo and surgery and with no evidence of disease, I once again struck out to find my grown up job, though this time with a bit more hope and purpose. I’d wanted to work with breast cancer advocates before but was unsure how to transition from being a scientist among scientists to being a scientist among advocates. Now as a survivor, I had gained automatic entry into the advocate’s world. I talked to several people who declared me a unique trifecta of researcher-patient-advocate, and offered to help me get the job I wanted. All I had to do was tell them what I wanted. Which meant I needed to know what I wanted.

So I’ve spent the last three years saying, “Yes.” I went to every meeting I could, met all the people, did all the twitter chats. I blogged on my own site and wrote for anyone else who would have me. I did live and recorded interviews, gave talks big and small. Though I’ve been paid for a few small projects, it’s pretty much been like a three year internship. But I figured if I talked to enough people and did enough different things, I’d surely figure out exactly what it was that I actually wanted. It took two long years of saying “yes” to figure out what I wanted to do, and another year of saying “yes” to actually make it happen, but I finally figured out what I want to be when I grow up, and I’m starting my first real grown up job today! Just in the nick of time, too. Forty is knocking on my door, and it seems like it’s high time that I consider myself a proper grown up.

After two years of saying, “yes,” I ended up sitting next to an interesting young woman at a dinner at AACR in Philadelphia. Corrie was a scientist about my age, had two young kids, and she was a cancer survivor, too. I think we talked a little about her job at the Broad Institute where she was able to combine some patient advocacy and outreach with her scientific position, but mostly we talked about kids and cancer and the plight of young scientists pursuing a career in academic research. I came home from AACR with a stack of cards, contacts who I thought might eventually help me land a job, and a new cancer friend, Corrie.

I wasn’t surprised when I saw her name on the announcement for a twitter chat coming up a few months later to talk about the new, still unreleased Metastatic Breast Cancer Project at the Broad Institute. The surprise came from my response to the project. As the minutes of the twitter chat ticked by and I learned more about the project, I found myself becoming increasingly excited at its promise, truly believing that this team was uniquely positioned to make huge advances in breast cancer research and the way breast cancer patients will be treated in the future. (I won’t rehash it here, but read what I wrote about the MBC Project after it launched in October.) I signed off the chat that night realizing that I might have figured out what I wanted to do when I grew up, or at the very least, I’d found the place I wanted to do it. I felt a little uncomfortable, but figured it would cost me nothing, so I got in touch with Corrie. After reminding her what a charming dinner companion I’d been in Philadelphia, I gushed unabashedly about the project and told her that if she had a place on her team for a scientist/advocate in Washington, DC, I hoped she’d consider me. They were still a few months from the official launch and couldn’t really grow the staff at that point, but we talked for nearly an hour about the project and how I might ultimately contribute to the team. After another year of saying “yes” to most anyone and staying in contact with Corrie, the MBC Project has grown by leaps and bounds, and I’ll be joining the team! Technically, I think my job title is “patient advocate,” I’ll be doing outreach and education with patients and the MBC Project advocacy partners. We have a lot of ideas about exactly what I’ll be doing, but hopefully I’ll start by interacting with patients– those who are already part of the project and those who want to know more before they say “Count me in.” Corrie and Nick, the oncologist who had the remarkable vision of a research project that directly engages patients, have built a great patient community.  I hope to be a resource for those men and women, not only answering their questions, but equipping those with ideas to grow the MBC Project among their communities. I hope to interact with the advocacy groups who have partnered with the MBC Project and to form new partnerships that will broaden the diversity of MBC Project participants.  And lots more things! It’s a part-time position, and I can work from home. I will do a little bit of travel, and I’ll probably go up to Boston every month or two.

Wait. Did I forget to mention that the Broad Institute is in Boston? So maybe I should also mention that its official name is the Eli and Edythe L. Broad Institute of MIT and Harvard. Yup. I didn’t get to go to school at MIT, but now they’re paying me. Pretty stinking cool. Maybe that 11 year old wasn’t so naive after all. (But sorry Mom, I’m not going to be busting out the violin anytime soon, I don’t think the Boston Pops have a place for a DC based violin player who hasn’t played the violin in a very long time.)

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Cancer FOMO

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I was introduced to a new cancer friend last week– a friend of a friend of a few different friends of mine. They all pointed her towards me because she, too, has triple negative breast cancer, and she had some more specific questions about treatment of TNBC. She had consults set up with a few different oncologists and a pretty thorough list of questions to ask them. She asked me about my treatment and what she might expect when she talked to doctors.

Of course, I told her what I’ve said thousands of time– I’m not a doctor. But I told her about the treatments that I’d had– dose dense AC followed by T. It was standard of care at the time, and it gave me the best results that one could expect– a pathological complete response (pCR). They knew where the cancer was before I was treated, and when I had surgery, the pathologist couldn’t find any cancer cells left. They were all dead. There is still debate whether pCR is a good surrogate for overall survival (OS)– whether having a pCR means anything about whether the cancer will come back and how long you will live– but it’s still taken as a good sign.

As I wrote to my new friend, I told her she might ask about the addition of a platinum to her chemo regimen. Since I’ve finished chemo, studies have been published revealing that more patients have a pCR if they receive a platinum in addition to ddAC-T, so I’d want that if I were her. I have another TNBC friend who didn’t have a pCR, so she is now on capecitabine (Xeloda) as a sort of preventative agent against a potential recurrence, so that might be a consideration for my new friend, too.

Let’s be clear, even without a platinum, I had a pCR, which is what those studies were going after anyway. And with a pCR, there was no reason for me to have any further treatment with potentially undesirable short term side effects and even more concerning, potential long term side effects. Yet I was left sitting there with a terrible case of #FOMO. Fear Of Missing Out. In the 3+ years since my diagnosis, there are different treatments. We all want the latest iPhone, the newest features on a car, and to eat at the hot, new restaurant. So of course, I want the best, newest cancer treatment. As awful as more chemo is (infusion or oral), part of me wants more.  The evidence based part of me knows that I’ve done everything that has been demonstrated to be beneficial to me, and 3+ years out, I have a pretty good prognosis. But thinking about the way my treatment would be different today leaves me with some serious #cancerFOMO. Maybe it’s because I worry that one more thing might be all that’s standing between me and the gold standard of all clinical trials: OS. Overall survival is really what I’m after, because regardless what I think about cancer treatments, I know that I have major #lifeFOMO. I don’t want to miss a second.

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